Wednesday, February 5, 2014

So, I've covered that I got new knees, and that they are fantastic, but I feel like I have not completely covered why. To do so, I feel like I should go back and recap all of my adventures.

The road to full recovery is a long one, one that I am still on four years later. I healed quickly, and was back on my feet in record time. On a horse again just six weeks post-op. But it was hard. It's still hard. I don't like to admit it, let alone show how hard it is, but I am affected often. Usually not with knee pain, but with fatigue and listlessness. I can't find the words for the sheer drowning sensation I feel sometimes, or for the lymphatic feeling that washes over me, but it's something I hate. I hate it even more that I am unable to control it. It's something I battle with often.

Aside from all of the little physical triumphs of recovery, healing getting stronger, getting back on a horse, etcetera, my first real victory came a little over two years after my surgery, in the summer of 2012.

My best friend, Jeff Murphy, is a Wildlife Technician. I could go on about how romantic of a job it is, studying endangered species in their natural habitats, being surrounded by wilderness that only few truly understand, but I will save it for him to tell when he finally writes his book. It will be amazing and no doubt be made into a movie, but that is neither here nor there at the moment.

I had visited him at Crater Lake before. Once his first year out there, and again the summer before my surgery. I've spent time in the North West prior to Jeff getting the job at the lake, and I couldn't soak enough of it in. Every time I go back I feel an extreme sense of peace come over me, and Jeff just gave me another excuse to submerge myself again.

In the summer of 2012, I was still healing. I was struggling with extreme apathy. I didn't feel like I had the energy, let alone the want, to do anything. I decided I had to go. If being back in the North West, with my best friend, couldn't fix me, I was a lost cause. So I went.

The first day we did a few easy trails, one of my favorites and one new. Awe-inspiring isn't a strong enough of a sentiment to describe either of them. The next day, we went on a literal bear hunt. Not to hurt the bear in anyway, just to observe. The bear eluded us, but a relatively easy hike none-the-less. The last full day at the lake, Jeff asked if I was up for Cleetwood. It was a trail I had done prior to my knees, and I knew it wouldn't be easy.

﻿﻿﻿﻿﻿It would be the longest, and by far the most strenuous walk that I had taken my new knees on. It is a 2.2 mile round trip and with a sign at the trail head warning people with walking problems not to attempt the 11% grade and innumerous switchbacks. I asked Jeff if he thought I could manage it, he nodded , and so we went. We took our time, going down the steep grade on loose soil proved to be difficult, but manageable. I took one step at a time and trusted. Trusted that I could handle it. Trusted that I was stronger than I thought. I could feel, not my knees, but my muscles complain at the task I was challenging them to. Reminding me that it had been quite a while since I have asked them to preform that intensely. But down we went. Step by step.

﻿

As the trail opened to reveal the lake below, I took a deep breath. I was sore, and worn, but it felt refreshing. I was pushing myself. I was tired of being tired and I wanted my life back.

We spent some time by the lake. I always forget how amazing it is to look into something so deep and clear. It makes you feel small.

As we started our ascent out of the caldera, I felt better about everything, but it couldn't compare to the feeling I got when we reached the top and the head of the trail.

I did it. Not in record time, but I did it. I pushed hard and it felt like I had new life breathed into me. All of the doubt I had in myself was pushed aside and I felt like I had my fight back. Looking back on it a few years later, I feel like I can say it was one of the most edifying moments of my life.

I still battle with feelings of detachment and disinterest, but I no longer feel as though I am on the losing side of the fight.

Thursday, January 9, 2014

Holy Hiatus Batman! Where to begin? First, I guess it's a great thing that I have had to spend fewer days in front of a computer and more days being able to be out and about. So I guess I will use the next few blogs to kind of play catch-up.

Which leads me to my 2014 New Year's Resolution - Post here, at very least, once a week. Even if it's just a short little blurb. Once a week. There. It's in writing. It shouldn't be too difficult at first since I have over a year of material stored up, but because I have to start somewhere -

FRIENDSHIPS

Like the title suggests, the content of this post is about resolutions (check) and revelations, of which I have had quite a few. One of the most important one's being - Not to waste my energy on people that do not deserve it. That may sound extremely self-interested, so let me try to explain. I only wake up with a certain amount of energy everyday, it's a very precious commodity. And like any thing in short supply, it's also usually in high demand. Work takes a lot of the pie. I still cannot work full 8 hour days without being dead to the world by day three, nonetheless, even my 4-5 hour days take a lot out of me. Home is next. While Bryan has no problem taking care of me, I also love taking care of him. It truly brings me joy when I can do something for him after all that he does for me. ADLs - Activities of Daily Living. Everything takes energy. Rising. Showering. Dressing. Brushing my teeth. Combing my hair... you get the picture. I take nothing for granted as it all drains my energy supply. Friendships. Here is where it gets slightly less cut and dry. I am an exceedingly social person. I love going out, getting dressed up, surrounding myself with people and having an all around good time. My RA does not. My RA much prefers to stay home in yoga pants, sans make-up, with my unbrushed hair up in a ponytail. It's a battle I deal with every single day and sometimes, my RA wins. Sometimes I miss birthdays (even my own), dinners, parties, get-togethers, barbecues, cocktails, shindigs and the occasional soiree. I. HATE. IT. I hate it. I hate missing any type of social event or activity. It genuinely shakes me to my core. I hate receiving an invitation and having to check the "regretfully decline" box. I hate when people take it personally.

This blows my mind. Not only does it blow my mind that people think I choose to be in pain rather than party, but it has also given me two, distinct groups of "friends". The first are friends in every sense of the word. The ones that make up the infrastructure of my support system. The ones who, although maybe disappointed, always understand when the RA wins. The ones who know I would much rather be out rabble-rousing with them then watching reruns on my couch.

Then there are the "friends" that take it as a personal insult when I fail to make an appearance at any given occasion. The ones who don't understand and don't care to. The ones that whisper cheap digs or snide comments behind closed doors to each other, but can put on smiles and affectations when they want an invitation extended to them. The ones that are hurt when it isn't. The ones who lay a passive aggressive guilt trip because they fail to see the larger picture. These are the relationships that I simply do not have the energy for. Or, rather, I choose expend my daily energy quota on those who love and support me. The people that, when I say that I am too sore to go out, don't take my lack-of-presence as an opportunity to gossip or make accusations and assumptions, but instead, show up at my door, in comfies, with a bottle of wine in hand. If that makes me callous and self-interested. I'm okay with that.

If you are going to take anything away from this post - Learn who is there for you, and who is there for themselves and always give your energy accordingly.

Monday, August 13, 2012

So getting back to me and my arthritis. The biggest game changer to date has been my bi-lateral knee replacement, which has now been over two years ago. They rebuilt me. They made me stronger. Healing has been going brilliantly. I have full mobility back, my strength is getting there and my endurance a distant, yet persistent third.

The biggest change in the past year is the moving into a new home with my boyfriend. A funny, intelligent boy who is a great conversationalist with a yearning for knowledge not too far from that of my own. He’s also rather good looking, which certainly doesn’t hurt his case… but again all this has its place in a blog about my personal life instead of my personal life with RA. So why am I telling you this? Because he helped me realize its okay to be me, and to do what I love. You see, living with RA, I can really only do so much in any given day. Christine Miserandino's Spoon Theory demonstrates this principle really well. Never heard of it? You should familiarize yourself with it. Here is the link. Read it. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. It puts in perspective what people with RA, or any auto-immune disease, go through every day.

So back to this boy and why he is so great in reference to my life with RA. Having been diagnosed at 12, I have never been in a relationship where my disability was not a factor. It usually starts out ok, but then it goes downhill once I hit a flare-up. It's difficult to explain to someone how I am able to be so active one day, and then the next, not be able to move. I don't just mean not be able to get out, go for a stroll or get on my horse, I mean CAN NOT move. Spending all day in bed, or the couch, or on a "good" flare day, at the computer. Dishes pile up, laundry needs to be done, the house needs to be cleaned, all things I am well aware of, but helpless to fix during a flare. I become dependent, something I can say I truly hate more than anything, not solely because I am prideful, but because of the burden I was always made to feel I was. I was once told by a boy that I was lucky to have him, and that I would never find anyone else that would "put up" with my disability like he did.

Anyway, another point of distention were days that I did feel good. Most people wake up, and with the help of a cup of coffee, have enough energy to do whatever they want and need to do. This is where the Spoon Theory comes in. Every morning I wake up with a set amount of "spoons". Some days I have very few, only just enough to get through activities of daily living (ADL’s). Other days I have more. When I happen to have spoons leftover, I have to make a choice. I can either get out, go for a walk or ride my horse, or I can stay home, catch up on housework and cook dinner. But not both. I can tell you once I start to feel better, I could give a damn about dishes or dust. I am first going to do what makes me happy. I am not saying that is what I should do, I am saying that is what I am doing. Selfish? I think it’s more about self preservation. If I spend my whole life being either sick and miserable, or well and miserable in a kempt house, I am still miserable. And I do not mean “I didn’t get the toy I wanted for Christmas miserable”, I mean deeply despondent to the verge where one starts to lose themselves, and losing oneself is an awful thing to let happen. It's happened to me before, when I started to believe the ones who told me I wasn't good enough, that I was a burden instead of something to be cherished.

And that's what this boy does. He cherishes me. He supports me. He takes care of me. He helps me. He builds me up instead of tearing me down. And above all, he let's me be me. The Good, the bad and the ugly. I guess, in brevity, that's what this rambling is about - find someone who loves you. Accepts you. Everything about you. Trust me someone's out there just waiting to fall in love with everything that you have to offer.

Monday, August 8, 2011

So, It’s been a little over a year since my knee surgery (and my last post), for the latter I apologize. It’s not that I wanted to stop communicating my day to day life with RA, it’s more like I’ve been trying to keep up with my younger, stronger knees. Like a tired mother chasing around a rambunctious toddler. You see, my ability and strength is coming back faster than my endurance, leaving me all but drained at the end of the day.

At first I didn’t feel too guilty about this, as I was using this blog more as an outlet. A place to put into words exactly what I was feeling and going through and figured no one’s universe would come crashing down if I didn’t get around to posting. I was being narrow minded and a little selfish. It was brought to my attention recently that this blog doesn’t only have to be an outlet for me, but a resource for others. A way or other patients to relate and know they are not alone, and for people trying to better understand the disease and learn about it. Maybe to bridge the gap a little between those that suffer from RA and those that are confused by it. Even to lend a hand those that fall into both categories. Unlike many of those who have been diagnosed with RA, I’m not afraid to talk about it, to answer questions, or to educate. I have no problem explaining to people who don’t understand the struggles of the disease, exactly what we go through every day, which those that are living with the disease know, it’s no easy task. People don’t understand everything that this delightful ailment comes with. The pain, the fatigue, the inflammation, the medicinal side effects, flare-ups and let downs. But sadly, some people don’t want to know, to learn. They’d much rather go along thinking that’s it’s all in our, the patients head. That we are lazy hypochondriacs, after all, everyone has aches and pains. Everyone gets tired. I’ll be the voice. I’m not ashamed or defeated and trust me, I have a lot to say.

Wednesday, June 30, 2010

At times, I feel as though my RA shares similarities with the story Alice in Wonderland. Like Alice, I wake up and I wonder, have I been changed in the night? Was I the same when I got up this morning? Sometimes I almost think I can remember feeling a little different. But, if I'm not the same, the next question is 'Who in the world am I?’ That is the great puzzle.

Some days, I wake up and feel that I used to be much more..."muchier." Those are the days that I feel as if I have lost my muchness. That I am Almost-Ashley. Not quite the Ashley that I once was. I feel that Almost-Ashley is falling down a rabbit hole, spiraling out of control, to find herself in a world she cannot explain. A world where nothing seems to make sense. A world where she is told to “eat this”, and “drink that”… only to be surprised with results and side effects that she did not expect. These are the days that Almost-Ashley, almost decides that living in this muddled world is impossible.

On these days, like Alice, I try to believe in as many as six impossible things before breakfast. Count them. One, there is medicine that will relieve my swelling. Two, there is surgery to help my ailments. Three, I recover quickly. Four, symptoms can disappear. Five, there is a place for physical therapy. Six, I can slay the arthritis.

While my six things may not seem impossible to outsiders, peering through my looking glass, people that suffer from RA, or any other chronic condition understand that even such actions as walking, standing or sleeping can seem like impossible tasks. Everyone has their own monsters to slay. Their own symptoms and difficulties. Their own impossibilities. Because of this, every day, I try my hardest to wake up, and remember that things are only impossible if you believe they are impossible. Every morning when I wake up, I make a conscious decision. I make the decision to either be Almost or Absolutely me. Some mornings the decision is easy, other mornings it is challenging. Some days I wake up and don’t even want to be me at all. No matter what, when I feel like it impossible to get out of bed, I do it. I was told at the onset of my RA it was impossible to competitively ride, one year ago I showed in the World Pinto Show, one of the highest levels of competition on that circuit. After surgery, I was told it was impossible to stand and walk unassisted earlier than the end of July. I was rising and walking by the beginning of June. Things are only impossible if you BELIEVE they are impossible. This is the attitude that separates Almost-Ashley from Absolutely-Ashley. Absolutely-Ashley never lets anyone, including herself, tell her anything is impossible. One step is all it takes to turn the impossible, possible. One step. One step is all it takes to reclaim your muchness.

Monday, June 28, 2010

So it has been a little over a month since I have given you a glimpse into my everyday life. These past few weeks I have been traveling down the road of recovery, and what a journey it has been.

It wasn't, and still is not an easy path. Having both knees taken out, and new ones cemented into a freshly formed and filed sockets. Having a total of 51 staples holding together two 10 inch incisions that would eventually heal into 10 inch scars. Having those same 51 staples ripped back out one at a time. Being asked the day after your surgery to not only start therapy, but to be expected to walk as well.

I walked. I walked a total of 15 steps that morning. Those may quite possibly have been the 15 most difficult steps I have ever been asked to take in my life. But that's something I don't let just anybody know. To most of the world those 15 steps were the best steps I have ever chosen to take. Those were my first 15 steps toward a new, and promising future. Both renditions of those few seconds on May 26th are correct. They were the most difficult, and liberating steps I had ever taken. As I collapsed back into my chair, I cried. I cried tears forged from pain and from relief. I was going to be able to do this, and from that moment on I knew it was only going to become easier.

Which it did. Within three days, with the help of a walker I was walking to and from therapy. Gradually, my dependence on the walker diminished as my strength and balance came back. Three weeks after my surgery date I was rising and walking unassisted, that is two months earlier than my surgeon and therapists predicted. I often get asked the question how. Attitude.

Attitude truly is everything. I was never a victim and therefore, never acted like one. I didn't feel sorry for myself and wasn't looking for pity. I wanted this. I needed this. I knew no matter how difficult it was, or what my pain level reached, I had lived through worse, and made it, just as would this time. I knew that those times that I had lived through before, I didn't have an answer. I knew I was in pain and every medication and treatment I had tried failed me. I also knew, my pain was getting worse. This time it was different. This time I was getting better, and every time something was difficult I knew it was going to get easier. Every time I pushed through for just a few more steps, or a couple extra reps, it wasn't going to be in vain. I was going to get through this and become stronger. I was going to be able to return to a life that wasn't wheelchair accessible only.

I know my journey is far from over and I still have miles to go. I understand that now that my knees are healing, that doesn't affect the pain or flares in other joints. I have learned that the surgery did not cure the illness or fatigue that plagues me. I realize that rheumatoid arthritis is a monster that I have to battle daily, but at least I am doing battle on two new titanium knees, that for now, seem quite up to the challenge.

Monday, May 24, 2010

So today is the last day that I have to spend with my old knees. I feel as if I should have had a going away party or something. Granted I haven't felt quite up to it, but just the same, my knees and I have been through a lot.

As a baby I'm sure that I put some miles on them, crawling around, testing them, learning how to walk. Later, it was hopscotch, skip-it and jump rope. Tree climbing and bike riding. Hiking and swimming, my knees and I did it all and made it through life with only a few scrapes and bruises between us.

At a young age I had also found horses, my passion in life, and my knees were right there with me. Supporting me as I learned how to ride and how to jump. Picking me up when I lost contact with my saddle, and made contact with the ground. My knees and I were a team.

Then something happened. We started to grow apart. At first it was little things, like running and dancing. Then, my knees no longer wanted to take the impact that came with high level equestrian jumping competition. After a while,they resisted even small tasks such as walking, standing and climbing stairs. They had completely forsaken me, leaving me to spend my days in bed or experiencing life outside of my apartment, from a wheelchair, looking up at my world around me. Looking up at a world that I was so used to surveying from the back of a horse, or the limb of a tree. My knees and I had reached a cross road.

It was an easy decision. The decision to replace my old knees with new metal and plastic ones. I feel it was like the decision a major league coach makes when he pulls from the bull pen. He knows the man standing on that mound is done and worn out, even injured, but the game still needs to be won. So he brings in the relief pitcher, and with this new, refreshed pitcher, the promise of the chance to win the game.

So here I stand on my pitching mound ready, ready for relief, ready for promise, and ready to turn this game around.

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About Me

Welcome to my crazy, exciting life and all the adventures I experience along with it. In my blog I will reveal what it's like to be a young, active adult with severe rheumatoid arthritis. I will share all of the challenges it presents as well as how I get through them. It's been a tough journey, but there are always some moments that make the struggle seem worth it.

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About My Rheumatoid Arthritis

When I was twelve years old, I woke up one morning and couldn't move my left arm. It soon spread down my left side of my body, then preceded up the right. I was completely immobile. Seeking help, and after countless tests, I was diagnosed with JRA (Juvenile Rheumatoid Arthritis). The onset was traced back to an untreated bout with strep throat. Yup, common strep throat. Over the next few years I was in and out of a wheelchair, used crutches and canes, tinkered with medications and dosages.

At age 19 I went into remission. I was able to stop a majority of my medications and return to my normal activity level. Life was great. ut the sleeping monster began to stir.

By 22 I was put back on prednisone and was able to maintain a normal quality of life. However, this quality was slowley slipping away. At 24 both of my knees were quite stiff on a daily basis and the fatigue started to set in. And now at 26, barely able to stand and walk on my own, and spending much of my time at home, jailed in my own house, I am facing a full double knee replacement.

Rheumatoid Arthritis is a silent disease, and most people that suffer from it, suffer in silence. As it attacks and erodes our joints and cartilige from the inside, while we remain strong on the outside, this gives people little understanding of what we are really going through. I am writing this blog to shed some light.